Does anyone understand?

[Mama2Rylan]

Hi Guys!

So these past few days have been a little tough on me. I have just been really stressed with school (I?m in my second semester of college) and raising my son by myself, plus dealing with my heart condition. I mean luckily I have been doing well since my surgery (I had open heart August 2005). I just feel that people don?t really understand what I went through. I mean I know I can?t get too hard on them because they haven?t been through it before, but they are always making comments to me like ?your always going to the doctor? or telling me they think I?m depressed because I seem to always be worried about my health. It?s starting to really get to me because I can?t just change the way I view my body anymore. I remember for the longest time I acted like I didn?t have a heart condition and that there was nothing wrong with me, well then after going through the past few years having doctors telling me that I could die, it takes a lot out of a person. I can?t be the same happy-go-lucky person I was anymore, because my heart is always going to worry me. And I am fine with that, I just don?t think the others understand that.

I mean there are times where I get really tired and I say that I can?t do something. I?ve had people tell me, that I was just using my heart as an excuse and basically that I need to get over it. I just don?t know what to say to that. Has anyone else felt that way? Like everyone was thinking you should just somehow magically forget about everything you went through and act like it?s all good? I would think that people would want me to stay on top of my condition, I mean for the first time I am finally aware of what my heart problems are and how they need to be treated. I?m not ignoring my problems anymore, and I am trying to get my life back. It?s just frustrating to me when the people that are suppose to be supporting me are talking about me so negatively, almost like they think I am just making stuff up. To be honest, I do get scared when my heart skips a beat or when I run out of breath, but isn?t it normal to worry about stuff like that?

I don?t mean to rant and rave here, but I just wanted to know if anyone else felt like their family didn?t understand what they were going through. At least I have you guys to complain to , thank you so much for listening.

 

[Karlynn]

I was a young mother when I was having some really nasty heart issues dealing with my valve and arrhythmia. It also took me about 2 full years to recover after my replacement. So I can understand where you are at right now. It's really hard for people to understand that someone that is young and looks fit, is having health problems. The next step is then for them to think that you're being a hypochondriac. What's really bad is when you have doctors that think that too.

I had to just come to my own understanding that I had to let people think what they were going to and try not to wear myself out being the person they thought I should be.

I wish you the very best!

 

[sue943]

I haven't been made to feel bad but it is only natural, after what we have been through, to have our conditions at the forefront of our minds, constantly. You cannot forget about it, especially when you have to constantly monitor your INR. We have 'heart conditions' and that is that.

 

[musician2k]

Yep I can identify, 100%. Most of my family fortunately has been very understanding. They've known about my BAV for a long time, and actually are more concerned at times than I am about the little things (skipped beats, etc.) I'm learning that some of the small stuff is really just that - small - and not worh repeating to others whose opinion I do not trust. For me the biggest issue, and violator of that trust, has been my job and even some of the people I used to work with. When I started getting fatigued & the migraines got ten times worse everybody just said, "OH, he's just so stressed out, he should really take it easy or just stop worrying...etc." and it was BS because in fact, my heart valve was giving out long before I really knew it and had something done about it. Now I'm having TIA's and there is a chance something else up further into the skull/brain area is wrong, vascularly, and this might be leading to the TIA's and migraines. But no, all my former coworkers could do is imagine I have mental health problems.

Wow! It feels good to vent sometimes. Sorry I went on. I know how you feel.

Chris

 

[Christina L]

I totally emphathize

I totally emphathize

with you. I long for the days when I didn't worry about anything having to do with my heart (I was told when I was young that I would likely need surgery "someday" but I lived as if that truly was never going to happen and until the age of 43, I never gave my heart a second thought. However, I can't go back. It is a constant struggle of the mind to try to be happy-go-lucky and enjoy life again.

I am so worried about my next echo and my sister who means well, says things like "Chris, let it go, what will be will be." Well, that is SO easy for her to say. She IS living a happy-go-lucky life as far as her health is concerned -no major health issues yet. People who are blessed with no major health issues have no clue what it is like to have a worry like that.

It is very frustrating and sometimes even on this board, I feel bad for posting my fears and my problems. It seems at times there is no one who understands - that is when a person has to go to God for peace.

I hope you and I both will find that peace and soon! Thanks for sharing - you are not alone here.

Christina L

 

[Georgia]

Yes, I'm sure you feel isolated when no one understands. But if it's any consolation, I think you'll find that you'll become more and more relaxed about all this as you're further out from surgery. Many of us have found that it takes at least a year to really recover; and since you're so busy and have so many demands on your energy and time, it may take even longer. Other than the pita of coumadin management, I truly forget about my heart most of the time - but that attitude was a long time coming for me.

Those who haven't had ohs simply can't comprehend that it can take so long for recovery - you look healthy, sound healthy, so how can you just wilt after a day of work/classes?!?!? WE KNOW. So rant and rave away.

 

[lynn]

Ooooo....I know what you're talkin' about!

Ooooo....I know what you're talkin' about!

First off, I see you are from WI?? I grew up in Madison, so I will always be a cheesehead

Let me put a little spin on it, a different view? Three and a half years ago I was looking for a new cardio because the one I had said "you will need a valve replacement in 1-7 years" and then told me he would talk to me if I started fainting, etc. BYE-BYE! Then I was told I had breast cancer, at 43, no family hx...nada....I had plenty of heart family hx, two aunts with valves and dad with a bypass.

I went through a bunch of surgeries and chemo for the BC, you have no idea how much I many people kept telling me *how strong you are* *you're so young* and on and on. They didn't know that I fell apart in the bathtub and bawled when the water was running or cried in the dark at nite (hubby and I sleep in separate beds due to his snoring...I swear )

Now with my BAVR looming I'm hearing it all over again, young...strong...why you?? I just have to put my faith in God, love my family, do my best to stick around for my kids and hubby, etc. It happens to all of us, no matter what your problem is, people don't know how to handle this type of thing. I lost good friends to my cancer because they didn't know what to say to me....isn't that sad???

It will be all right, you're strong and young! And, vent anytime...PM me if you want to do it personally!!!!

 

[aussiemember]

Hi there,

One of the reasons this forum is so valuable to me is that I feel "here" is people who DO understand. At 38 all of my friends are young, fit and healthy and while they are sympathetic and caring they really have no idea what it is to live with the thought of major surgery looming in my near future. I tend not to talk to them about it much because people tend to feel sorry for me and you can see them thinking - "I'm glad it's not me". On the other hand one of my close relatives is a medical specialist and he annoys me too because he is so casual about it all - he has the attitude that people have OHS every day and are fine so I really shouldn't even be worried at all - anyway - feel free to vent anytime you need - I will sure be doing so when I feel the need

 

[Ross]

Anyone who has not had this surgery cannot possibly understand what you've been through. They may think they can relate, usually offering up appendectomies, tonsillectomies etc for comparison, but they will NEVER get it until it happens to them. You are a lifetime heart patient, like it or not. Your bound to have great days and crappy days too. I'm sorry to say, but your going to have to discard others input and live for yourself, paying no attention to their comments. It's just the way it is.

 

[Nancy]

In our community, we have never come across anyone who understands or even wants to listen to all the things that have happened. Daughters will listen to it all, Joe's brother will listen to a certain extent, there are two neighbors who will listen a little, and the rest of the friends and family just cannot relate. They have their own set of problems, and adopting someone else's very serious problems even for a little while is not in the cards. Joe's close friends from long ago have dropped off the face of the earth.

Some in the medical community don't want to hear it either, surprisingly. Joe has actually had doctors who have begged off at the first meeting--too difficult for them.

Another thing to consider is that people have different thresholds of what they can hear about medically before they get anxious or ill. There are more people like that than I thought. Some relatives wanted to come to see Joe in the ICU because he was in critical condition. They were the nieces and nephews, about 30-40 something agewise. Viewing machines and tubes coming out of orifices where they shouldn't be, and seeing someone who was totally out of it and hallucinating was difficult for them and they didn't come too many times. So discussions about surgery where they actually cut into your heart is not for the "faint of heart".

Accepting this is hard, and you may find that you will develop a whole new set of friends. The rest of them will probably be polite, but not ask about more than they are capable of hearing.

This site is wonderful because we all "get it". You can come here and someone else will relate to what you have said. It is the ultimate support group.

 

[Adrienne]

I find that when I go on about the details too long, I can see people's eyes glazing over!

 

[ALCapshaw2]

Good responses from ALL of the above.

With most of your peers in their "invincible 20's",
there is just NO WAY they will ever understand
unless they too have to have OHS.

It's probably best to do your venting here on VR.com
where we "get it" and only provide the barest of details
to your family and friends, unless you find that rare
and empathetic person who can handle it.

Life is not always fair...

'AL Capshaw'

 

[Jackie]

I am 66 years old and have a friend, who I thought was one of my best friends. We used to talk on the phone everyday and see each other maybe once a week to go shopping and out to lunch. I had surgery April 6, 2006 and I have seen her 2 times since my AVR and talked to her a few times. She thinks it is depressing to be around people who have health issues. I try not to discuss any health issues when I do talk to her, that really dosen't help. Oh Well!!!! I can do everything she can do but she thinks of me as being sick.

Thank God for my good friends I have real friends I have known for 52 years. They make up for the ones you can't trust.

Jackie

 

[Marguerite53]

You are one year older than my oldest child. I just want to reach through cyber space and give you a huge hug!!!

You are young, and you have huge responsibilities and a challenging life with school and health. You are most certainly travelling through your days in a much more mature state of mind than your peers. You are going to have to look over them. Just look right over the top of their heads! Keep your "eyes on the prize". Your success. You are working very hard on the design of your life. As it progresses, you will meet others who can share your complexities. Don't even worry about these insensitive people.

Come here often and for anything! As you can see.....we do understand!

Take care. Wrap that bundle of joy Rylan up in your arms and sing a song together.....the rest of the world can feel what they want!!

Marguerite

 

[Mama2Rylan]

Thank you guys for all of your responses. It does feel good knowing that I have somewhere to go when I need a friend to talk too. What you guys have said has made me think a lot about how I feel. I don?t blame my friends for not understanding, I just think that apart of me has really changed (or I guess you could say matured) so it is difficult for me to understand some of my friends as well. To be honest, I wouldn?t change what has happened to be, I think it has made me a much stronger person. It?s funny when I talk to some of my friends about my heart surgery, they just look at me and ask how I know so much and tell me that I am really smart. I know that I do talk about my condition a lot, but I find that it has been difficult to let it go. I dealt with it for over three years (all through my pregnancy, then waiting a year to have surgery and finally the recovery) so I don?t know how to be ?normal? just yet. I am finding every day is getting easier, especially when I talk to the docs and they tell me how well I am doing. Hopefully I will start not to worry so much about every little thing, it?s just a scary thing to go through. Even though I have dealt with heart problems my entire life, I didn?t fully understand what was wrong with me until this last surgery, so it was sort of having a bunch of information tossed at me and I just had to deal with it. But I just want to say thank you to every one, and all the support. I didn?t think I was the only one out there who had these feelings (Now I know I?m not a total freak ). Thanks again to everyone who posted.

 

[Kate]

I agree. People sort of know how to deal with an older person who is starting to have health problems or with a young person who is dying of cancer or something equally tragic. They are less clear how to relate to someone who is young, otherwise healthy, not terminal, but dealing with a serious life-long condition. I have definitely felt like, once I my scar was healed, people expected me to be over it. Well, it just wasn't quite like that. Kate

 

[pipersmith]

I am so sorry that you feel this way. I too can relate. I am a bit older (34), but I am finishing up my last semester of college, with 4 kiddos. I have been pleasently surprised at the number of people that have shown concern and offered to help in any/ every way. Then of course, people that I thought would show the most concern, seem aloof, like I am just being dramatic. One family member rolled her eyes and said "Do you realize how common this surgery is? It really is not a big deal." I would gladly let her take my place (not really!) I figure, she is about your age. She is at that place in her life where she is finding her way, lots of choices, and no on to really consider but herself. I am sure that she did not realize how incredibly insensitive her comment was. Likely, your peers don't either. (even though that is no excuse!)

Find the positives - you are here, you have your son, you are helping yourself and your son by going to school. You can look in the mirror and see how lucky and strong you are - you know what you have been through and what you can do. Surround yourself with positive people, and remove yourself from those who steal your joy. And, of course, you have found a whole community of people that understand EXACTLY how you feel, whenever you need additional support.

Please let me know if I can help in any way!!!

 

[CathyK.]

I am going through the same thing. My parent has been on my case because I am not the person I used to be. Well, no I'm not and probably won't be. She doesn't understand, nor do others in my family. Friends seem to be doing a better job than family.

Good information for you from everyone. You are going to be more mature than your peers because of things in you life. I have learned to just talk with the one's that want to know and help and don't mention it to the others.

Good Luck! You have alot going on in your life, just keep focused on what is important to you and your child.

 

[sue943]

One family member rolled her eyes and said "Do you realize how common this surgery is? It really is not a big deal."

That comment made me smile. My former boss also told me that it was 'routine surgery' - but that didn't stop him terminating my employment!

 

[debster913]

Hi,
Just thought I'd add my two cents:

First of all, I commend you for being a single mom. Whether that was by choice or chance, it is a tremendous responsibility. My mother was a single mom for many years, and I never truly appreciated that until I was older.

You are not the only one; heart surgery is major stuff. It's normal to feel stressed and overwhelmed at times; who doesn't feel that way? We "heart patients" seem to be more aware of our bodies and "conditions" than others. Maybe it's because of the surgeries we've been through, or that we're more cognizant of every twitch, palpitation, burn, etc. I know for me, having had terrible symptoms before my surgery, I am more aware of things that don'tt seem right. I remember you replied to one of my posts when I'd been (and still am a little) short of breath. It's normal--no one wants to go through surgry again if it can be helped!

It's true that some people don't understand. Unfortunately, unless they themselves have been through heart surgery or know someone close who has, they think we're just being sensitive. It's a life or death thing! The best thing is just not to let it get to you. Life is tough enough without having to deal with negative people.

Just do the best you can and take care of yourself!

Debi (debster913)